HELP: J. IS DYING FROM UNKNOWN DISEASE
J. is gradually dying from an unidentified disease. she is a woman, 57 year old,
and she has been ill for 14 months now. She has been in the hospital
during almost all this time, but nothing has been found. Her state is worsening,
it is an emergency. Following is a description of her disease. If anyone
can help (idea? people to contact? better newsgroup? etc...),
please send an e-mail, if possible mentioning your background.
Dec. 95: first symptoms: fatigue, nausea
Jan. 96: memory problems, difficulty to read, loss of balance, gradual
weakening. Nothing in the scanner.
Feb.-March. 96: a few hour coma on Feb., 2nd. Hospitalization.
Mid Feb.: tracheotomy. J. couldn't breathe by herself more than 30 mn (0 today).
respiratory assistance.
Many exams: (scanner, mri, lumbar punctures, radiography, echography,
brain biopsy, electromyogram, electro-encephalogram, evoked potential, blood,
fiberscope): no results regarding any viral or paraneoplastic origin.
Anti HU antibody dosage slightly plus, then minus.
Evidence of an encephalitis with lesions. Feeding by perfusion, and oral
from end of March.
Communication: only by writing, more or less readable.
Apr.-June 96: Transfer to another hospital. Gastric complication in April and
May. No reeducation. Feeding by perfusion. More exams to control the preceding
ones; no results. Back to oral feeding in June.
Reeducation (arms and legs) in June and July. Difficulties to move hands
and fingers. placing of protheses a few hours a day.
Aug.-Sept. 96 "home hospitalization". Communication by reading on the lips.
10-15 kg weigh losses. Exhaustion.
Oct.-Dec. 96: back to the hospital. fistula between oesophagus and trachea.
Placing of a gastrotomy (extraction) and jejunostomy (feeding).
After one month, things were better, the necrosis disappeared by itself.
Speaking cannula enabling a weak oral communication.
end of Dec. 96- mid Feb.97: Home hospitalization again.
Removal of jejunostomy, feeding by gastrotomy.
placing of protheses on both feet. Improvement of the general state until end of
Jan.
Mid Feb. 97: Back to hospital. General weakening. disability of moving any
member. frequent periods of sleep. First attempts to use acupuncture (which
woke her up)
The following pathologies were eliminated:
herpetic encephalitis; viral encephalitis: varicella shingles virus,
cytomegalo virus; hepatitis A,B,C; HIV 1,2;
mycoplasm; chlamydia; Lyme disease; coxsackie; rubella; toxoplasmosis;
antibody antinucleus anti native dna; anti mitochondria; anti smooth muscle;
cryoglobulin; pathology of pancreas; ANCA; multiple sclerosis; Guillain
Barre syndrom; Charcot disease
Thank you.